Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundationwas created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

Random Shots of Mattie, Family and Friends

July 11, 2012

Tonight's picture was taken in August of 2009. By that point, we knew that Mattie's situation was terminal. Clearly I did not take this picture, but this photo says an awful lot about that moment in time. Moments that weren't always pleasant! First if you look at Mattie, you will see he had cups covering his ears. Mattie was NOT trying to be cute. Mattie was simply on overload, he did not like all the sounds in the clinic, and was getting agitated. He was trying to block out everything, and typically under these circumstances I would remove Mattie to a quieter location. But that day the clinic was a zoo and there was NO place to remove him to. Second, as you may notice I had to flush Mattie's broviac lines, since the dosage from the pain pump was completed. Typically in a hospital setting, I was not able to administer medications of any kind to Mattie. Only hospital personnel are allowed to give out medications! However, this pain pump was supplied to us through our in-home pharmacy. Therefore, I was trained to use it and also had to maintain it. In essence, Peter and I were Mattie's in-home nurses and doctors! The third component in this picture was my blackberry. This red phone was literally right on the table with us. It was during Mattie's cancer battle that the phone became my fifth appendage. An appendage which I still carry with me today. When I look at this picture, it actually makes me sad. Sad because I can tell Mattie was uncomfortable and greatly unhappy, and yet I still had to drag him to clinic to be monitored. The irony of all of this is we spent most of our treatment time in the in-patient unit, and very little time in the clinic. You would think therefore that I would shy away from the in-patient unit because this is where most of our trauma and then loss took place. Yet, for me it is the exact opposite. I dislike entering the clinic, I find it depressing, and it brings back bad memories, memories like the time portrayed in this photo.

Quote of the day: I want everyone to know I had this beautiful gift and it's gone now. I want everyone I see to know that I am in great pain. It would be easier if you lost a leg - then people could see it and say, "Oh! you lost a leg, how terrible." But when you lose a child, lose an only child, you've lost a part of yourself. I lost a bigger part of myself than a leg, the me that was important to me, and no one sees it. ~ Enid

Today, I pulled out all the books on grief that were given to me since Mattie died. I assure you, I have quite a library. One of the books I perused through today is entitled, How to go on living when someone you love dies. The book devotes one chapter to the loss of a child. So naturally I went to that chapter first after skimming through the introduction. Within that chapter was this paragraph................................

"There are greater social problems in responding to the death of a child than to other deaths. This is because as a bereaved parent you represent the very worst fears of every parent. If it happened to your child, then it could happen to my child. As a result, bereaved parents are avoided more than most other mourners and are victims of social ostracism and unrealistic expectations. This is why so many report that they feel like social lepers. The strange and callous response you may get from others can lead to a lack of important social validation about your child's death and also about ongoing reality. Like individuals who participated in sensory deprivation experiments, you will have difficulties with judging reality if you do not get feedback from others in your environment. When this lack of support and validation is coupled with the inappropriate expectations that society has for bereavement in general and specifically for the loss of a child, you actually can be hurt by society - it not only doesn't help you but can also make the situation worse for you."

What struck me about this paragraph is it elaborates on the loss of social friendships and connections that I have been writing about for almost a week now. However, it honed in on the actual problem, which I wasn't able to truly articulate! Certainly the demise of a friendship is hard enough to face, but it is the meaning of this disconnection that is devastating. Because changes in friendships signify a loss in social validation, a disconnection from reality, and as a result it makes an already volatile and difficult situation much much worse for the bereaved parent. Or as the author points out, a bereaved parent can actually be hurt by society. I suspect, many bereaved parents learn to turn inward, not express their true emotions, and therefore not talk to others about their lost child on a regular basis. However, the irony is that in order to process grief and cope with the loss, one has to TALK about it. If you can't do this with your friends, then who are you going to do this with? I suspect many parents turn to professional help because their typical support system within their community can't or wont help.

The highlight of my day was meeting my friend Junko for lunch. Junko and I had a lovely time at one of my neighborhood favorites and chatted for hours. The funny part is typically I am aware of my surroundings, but today, time went by and I paid no attention to the crowds of people coming and going around us. The beauty of Junko is I do not need to advocate for my position on grief, the long-term issues associated with it, or how my life has and is changing. She just accepts this as a given and therefore, I do not have to work on explaining myself, my behavior or how I am feeling. So what that produces within me is a feeling of validation, acceptance, and doesn't put me on the defensive. She validates that I am entitled to feeling how I do and doesn't make me feel judged or measured by some sort of imaginary societal timeline for grief. I haven't felt good for days because of asthma, but today's outing was a special and unique treat. Junko was one of the first moms I met at Mattie's elementary school, and back in 2007, we instantly connected. Now that Mattie is gone, we still instantly connect, but more importantly trust each other. Another gift brought to me by Mattie.

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Mattie Passed Away

With heavy hearts, Peter and I said goodbye to our precious Mattie when he died on September 8, 2009 at 7:15am. He fought death for five hours, but after being given propofol, he finally fell into a deep sleep. My hunch is he did not want to say good-bye to Peter and I, and it took massive amounts of drugs to end his suffering.

Mattie in Summary

Diagnosis timetable: July 23, 2008 - tumor in the right humerus; August 1, 2008 - tumor in the left humerus; August 6, 2008 - tumors in the right femur and left radius. On August 6, Mattie was officially diagnosed with Multifocal Synchronous Osteosarcoma.Tumor Resection and Limb salvage surgeries (repiphysis): on October 20, 2008 and November 12, 2008.Percentage of Necrosis: 60% in right humerus; 80% in left humerus; 100% in left radius; 2% in right femur.Chemo began on August 8, 2008: High Dose Methotrexate, Cisplatin, Doxorubicin; Ifosfamide, and Etoposide were added to the treatment protocol on December 1, 2008; MTP-PE was added to the treatment protocol on January 12, 2009.Chest CT scans post surgery:December 5, 2008 – four 3mm lung lesions; January 8, 2009 – CT scans reveal no change in the lung lesions; March 19, 2009 - CT scans reveal slight changes in two of the lesions. With potential increases in size of up to 1-2 mm per lesion. On June 5, 2009, CT scans at 1.5mm cuts (so very refined cuts) revealed that Mattie's lung lesions doubled in size since January. The four lesions are now 8-9mm in size, indicating that Chemotherapy is not working.Median Sternotomy: June 15th, 2009, removed 9 lesions, four in the left lung and five in the right lung. We do know that two of the lesions had calcified indicating bone material was present. This confirms that the bone cancer has metastasized to the lungs and that Mattie's chemotherapy was not effective at fighting the cancer in his lungs.PET Scan: There appears to be a possible variant (i.e something abnormal) in the lower left femur, but as of now it is too small to determine what it really is. Normally, one would biopsy this, but the location is difficult as it involves the growth plate, and with lung surgery imminent, and Mattie just being off of chemo, the advice we're getting is to wait and watch, and to see what it looks like during the next scan.Echocardiogram: Mattie has a reduced LVEF (Left Ventricle Ejection Fraction), which in layman terms means that his heart is not pumping with its normal level of pressure. Although it is not at a dangerous level, the doctors do want to monitor it with a follow-up echo in a few months to determine if this is a temporary impairment or if long term damage has been done.

Washington Post Article on The Mattie Miracle Cancer Foundation!!

An article on Vicki and Pete and the Mattie Miracle Cancer Foundation ran on July 24, 2010, in the Washington Post's Metro section.

Many thanks to Post Reporter Rick Rojas, for doing a great story on us! To read the article on the Post's website, click HERE

Washington Post Article on Reach the Day and Mattie's Blog

In the July 2nd, 2009 edition of the Washington Post, our story and our blog were briefly mentioned in an article regarding CureSearch's Reach The Day event, held June 22-23, 2009 on Capitol Hill.

Click HERE for a link to read the article on the Washington Post's web site.

H.R. 2109: CHILDHOOD CANCER SURVIVORSHIP RESEACH AND QUALITY OF LIFE ACT OF 2009

This video highlights some advocacy efforts to provide more effective drugs for childhood cancer patients and access to better care for survivors. This link also provides information on how to contact your representatives to urge them to support this bill.http://www.youtube.com/watch?v=fQY8vxO_quU

Mattie's Channel 9 Story

To watch the YouTube version of Mattie's video, click Mattie's News Story
or
to Read the actual story on the 9NewsNow site, click HERE

Mattie's Situation

Mattie Had Bone CancerMattie had a bone cancer called Osteosarcoma. The diagnosis was: multi-focal, synchronous osteosarcoma. He had four tumors in his extremities: the upper portions of the right and left Humerus, which is the bone that connects the shoulder to the two lower arm bones (the radius and ulna), the lower (distal) left radius (right near the wrist) and the lower (distal) right femur (just above the knee joint). Although commonly found in adults, this type of bone cancer is very, very rare when found in six year old children. Mattie started chemotherapy on Thursday, August 7, 2008, consisting of several five week cycles containing five types of drugs (Doxorubicin, Cisplatin, high dose Methotrexate, Ifosfamide and Etopicide). After the second cycle Mattie underwent a surgery (Oct. 20) to remove the tumor in his right humerus, and then a second surgery (Nov. 12) to remove the other three tumors. Mattie had three prostheses (both arms and the leg) that use the Repiphysis technology. We also tried an experimental drug called L-MTP-PE in the effort to give Mattie the best fighting chance of survival. It's a shame it wasn't enough.

All of our Family and Friends have done so many wonderful and amazing things for us to help Mattie. For that we are forever grateful. We want you all to know that we cannot thank you enough for these things and your selfless acts of kindness. We cannot adequately express how much your love, caring and devoted attention to Mattie meant to us. God Bless each and every one of you.

We made a deal from the beginning with Mattie to never lie to him about his situation, and we talked him through each step of the way. Mattie knew he had "some bad bugs" in some of his bones, and he knew that the drugs he was given were to kill the bugs, and the surgeries were meant to remove the bugs from his body. Mattie even requested from Dr. Bob Henshaw (who performed the surgery) "to let me keep a bone" once the procedures were over. Mattie did get several pictures of the procedures which he always thought were really neat.

This kind of statement only furthered our immense respect and astonishment that we had for Mattie and his emotional intellect, intelligence, and maturity. It was amazing that a six year-old could so quickly rationalize and embrace a situation and keep such a strong and positive attitude going, when his parents were a pair of emotional and physical trainwrecks. The irony is that Mattie gave us our strength to go on at a time when we should have been giving him his strength to fight.

Mattie's life during the 13 months of fighting cancer was not a normal one, even though we did whatever was humanly possible to make it as normal as possible. Fortunately, we have good friends who helped us get to the right doctors and to the program at the Lombardi Center in what everyone says was record-breaking time, who embraced us and helped us with what was unquestionably the greatest challenge of our lives. Of course, without our family and good friends, life would be a whole lot tougher than it is right now, so for those of you who are reading this, all we can say is Thank You and We Love You. God Bless.